Friday, September 27, 2013

Tweaking the med and the tablet

After last week's wonderfully low Valproic Acid blood level, C.'s pediatric neurologist gave us the OK to raise C.'s dosage. She now gets 500 mg. twice a day.

I am hoping against hope that this will yield results. While her number of seizures has remained at about three per day, some of them appeared more intense than previously.

We're still plugging away at the Tablet.

I no longer prod her to press it with her index finger even though that is the finger that she uses frequently to sign "more" or "yes". The occupational therapist (= tech expert) (see my earlier post) at her school recommended that I let her press with whatever suits her, e.g. even her knuckles.

Heeding her advice, I find that C. tends to favor pressing with her thumb. Here she is thumbing away.

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About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.